Tuesday, June 11, 2013

My son, the athlete. That's the largest takeaway piece from three hours of back to back appointments with various specialists last Friday. His affected hand bends in an unnatural way because of the spasticity of his muscle, the pinky side is so tight that it has pulled the entire wrist at at an angle. He has a brace that *may* help (they aren't really sure) but he won't wear it because with it, he can't throw a ball or hold onto his bike. And the neoprene material doesn't breathe, so it's hot.

His gait is worsening, as is evidenced by the constantly scraped knees. They want to refit him with an AFO, a brace that spans the length of his right calf, and continue with a new orthotic for his left foot as well. The braces he has now are made of a rigid plastic that prevent him from running or riding his bike, and aren't the most ideal summer footwear.

So here we are. We're working with our orthoticist who has been testing a new brace designed for athletes. It's smaller, more light weight, and should still provide the support that will help Henry support himself when he tires. And, more importantly, it will allow him to move the way four year old boys need to move. We have a referral to meet with a hand specialist, to assess Henry's ulnar deviation (fancy language for super-stubborn pinky finger muscle). They will fit him with a hand brace designed to prevent him from pulling his wrist, with the goal of treating him as an athlete. Whatever splint or brace we end up with will be designed to throw a ball, grip a bicycle, all in the heat of summer.

He's an athlete, and his doctors are treating him as such. I'm still wrapping my head around that one.

The developmental piece is trickier. His teacher talks about not being able to identify numbers or letters the way a typical four year old can, and the disconnect between shapes and language she's noticed in countless different scenarios. After speaking at length with our physiatrist, she is convinced that it's not a global delay, but instead a form of aphasia common in kids with cerebral palsy. He sees the square, knows it's a square, but can't get his brain to say the word "square". He excels at sequencing images in a story, but when it comes to describing the images he's silent. He knows the answer but can't find the words.

Our next specialist visit is with a neuropsychologist who'll study the way Henry learns concepts, and then how he expresses his knowledge. Everyone seems to think that intensive speech therapy that focuses not on pronunciation of words but on general language concepts is the place to start. We have four appointments already set up for the summer.

So that's where we are now. Four speech appointments, a neuropsych eval, a hand specialist, and an orthotics appointment (and follow ups). All to take place sometime between now and September 1, which also means it's the same time as opening seven shows at the theatre, hosting six appreciation events and two open houses, two concerts in the park for the local library and balancing summer baseball and violin lessons for Charlotte while training for a half marathon.

Sunday, February 10, 2013

Some people speak romantically about the moment their life
changed forever… the day they met their spouse, landed their dream job, won the
lottery. I still remember the day Aaron came into my life like it was
yesterday, and stand in amazement that I truly have my dream job, and have
repeatedly won the lottery (sadly never more than $5), but the moment that my
life changed forever… the moment that changed me forever, was February
10, 2009. The day Henry was born.

Four years ago.

The day they said he’d lost 85% of his left brain to a blood
clot that traveled through the umbilical cord and into his brain, then split in
two sending clots down the Middle Cerebral and Anterior arteries of his left
hemisphere. They used words like “catastrophic” and “massive” and the notes I
took from that first encounter have my exhausted handwriting of words to look
up. Ischemic, hemiplegia, then at the bottom… prognosis unknown. And that
sucked. Truly. But that didn’t change me, because that’s not the end of the
story.

The story continued with our friends and family rallying
around us. A steady stream of support that started that day and has carried us
through the past four years, and continues everyday in countless ways. That’s
what has changed me. It’s impossible to put into words how humbling it is to be
the cause. The family for whom people are praying and making lasagna and
delivering care packages. Because they care. About us. In a way I couldn’t have
imagined. It’s incredibly humbling, there’s no better way to say it, but in
addition to that, it fundamentally changes a person to accept that much help
from everyone. It absolutely changed everything that mattered in my life, and
it continues to shape our lives to this day.

That’s not to say that I was “wrong” before and now I’m
“right”, or that there’s a good and bad in this scenario, just that things are
different now. I know how much this community has been there for us, and
knowing that, I behave differently in this community that has given so
generously. I volunteer at the library, sitting on the Friends board and
creating and managing an inclusive summer art series for kids of all abilities.
I shop locally, and support Nina’s, Arcadia, Ederer’s and Phil’s with what
dollars we have. I always show up to waitress at the fish fry, even when it’s
not where I’d prefer to be. I know my elected officials and email them
regularly, from state officials right down to the village board. I pay close
attention to legislation that impacts education and special needs kids because
I know how it affects us in our real world. I’m engaged in a way I simply
wasn’t before Henry was born.

Beyond the community, I see my family in a different way
than I did four years ago. Four years ago when they came to sit with us, to
wait with us, to ask questions and take notes with us. To listen and cry and
hope and wish and pray and rally. That hasn’t lessened a bit in the past four
years. As Henry has grown and his medical needs are more clear and there are
more answers and fewer what if’s, I know that he is loved by so many, that his
journey is followed by those who wrote him notes and sang him songs, and keep
writing and keep singing and keep asking questions as we continue this
adventure. I ask for help. I accept help. I am grateful.

Hawk and Henry, the best of buds

Henry is amazing. He’s just perfect, opinionated, stubborn,
demanding, particular… everything a four year old should be. And I am thankful.
I’m thankful for the lessons that Henry has taught me about how to accept love
and support, to live in the today and not worry about the someday, to be a good
neighbor, to be a good friend. There is still much work to be done in all of these areas,
absolutely, but Henry’s only four.

About Me

We're navigating the waters of parenting a special needs child and shaping public policy to help families like our own. This journey is at best comprised of small measured successes and at worse, frustratingly beyond any semblence of control. It is, beyond everything, a journey, and we are honored to share it with you.